The Kid is All Right

I was sitting somewhere the other day and heard a bunch of moms discussing how accomplished their toddlers were, defined in their eyes by how their child measured up, or over, the "experts'" definition of average. Then the discussion moved to the importance of choosing the right preschool; how it leads to the right kindergarten, private school and college. It was very Nursery University, right here in suburban Philadelphia. I got out of there as quickly as possible.

Parents that talk about the percentages, the standards and how their child is exceeding them make me pity the child who may not ever live up to that parent's expectations. But as a continually reforming overachiever and perfectionist, I understand it. We are schooled from an early age that either we meet, exceed or fall short of some "standard," some number or qualifying skill. Had we not gone through what we had, then I know I would be freaking out if he wasn't leading in everything. But when you have a special needs kid, you're grateful for what they can do, and who they are. The latter has always been more important to me.

I can't brag that my kid is advanced in many areas, writing his name (or even drawing a closed circle) or going to the potty by himself yet. Because I threw away the parenting books when Evan was diagnosed with HH, that stuff doesn't really bother me. He'll get there and I don't believe it's what defines him as a person.

It says a lot about parenting when you have a nice kid that everyone wants to be around and play with. I can say that Evan is among the most-liked 3 year olds I know. I always receive compliments from strangers and people who know him what a friendly, charming, delightful little guy he is. I heard from one of his new therapists told me that the head of Evan's preschool loves him so much she wants to take him home with her.

Evan can also play by himself with one toy or a pile of books for an hour or more, which he is doing now as I type this. (At the risk of coming across as smug and/or holier-than-thou, I am convinced it's because we didn't let him watch TV.) He understands that doing nice things for people makes them happy, and this is a motivator for him - he's told me so. He says thank you and please almost all the time and sets and clears his place at the table without being asked.

Does my attitude seem a little sugarcoated? Maybe. Honestly, I don't always think this way and I fight off the negative thoughts more than I care to admit. While I'll have days where it helps to just complain about the bad stuff, writing about what's good sure helps me keep things in perspective, maintain my sanity, and it reminds me that there is a lot for which to be grateful, even when other stuff seems crappy.

Crafting for Dollars

The craft fair was Saturday, and all in all it was just OK. The attendance was pretty good and I got lots of compliments, but people weren't buying much - from me or the other vendors. Maybe it's too early for holiday shopping or maybe it's the economy.

It wasn't all a bust: I met some lovely people who live in my neighborhood and may have even made a new friend out of it. I did a trade for that cool vintage button necklace I'm wearing. In my mind, sitting and being able to sew or knit surrounded by crafty stuff for 5 hours is a pretty decent way to spend a rainy Saturday.


At any rate, if you are considering buying handmade for the holidays, I encourage you to check out the amazing selection of handmade items on etsy.com or artfire.com. There are several other handmade marketplaces, but I haven't had a chance to check them out myself yet. I'm continually amazed and inspired by the talent on these sites, and a handmade, unique item for a gift really can't be beat.

You may have noticed that there is a new ad box on the right under sponsors. Many of them are etsy shops or small crafty businesses like mine. These artists are paying a couple of cents per day to advertise here. If you're looking for something handmade, please check out their wares online.

Speaking of...I've just uploaded lots of new items to my general etsy shop, supercrafty.etsy.com. Please take a look! Others who read this blog with etsy shops, please feel free to post them in the comments on this post.

Sweet Pineapple Yams & Freebie Alert

A great freebie today: Sirius Satellite Radio's website has a free Martha Stewart Thanksgiving recipe booklet download. I think it might be today only, but you can save the pdf file to your desktop for reference later.

Here's an easy recipe for a delicious way to prepare yams: mashed with pineapple. I will be making this for Thanksgiving!

Sweet Pineapple Yams
Serves 6-8

2 1/2-3 cups of yams, peeled and cubed. It doesn't have to be the exact measurement.
15 oz can of crushed pineapple
3 Tbsp margarine or butter, melted
1/3 cup brown sugar, packed
1/4-1/2 tsp pumpkin pie spice, to taste

1. Preheat oven to 350 degrees.
   
2. Boil the yams until soft, for mashing.
3. While yams are cooking, simmer the pineapple in juice for about 10 minutes, reducing down the liquid.
4. Mash yams, then add all remaining ingredients and mix well. To make this very easy, I just throw all the ingredients into my Kitchen Aid mixer for a couple of minutes until it's the consistency of slightly lumpy mashed potatoes.
   
5. Transfer to a glass 8" square baking dish and bake uncovered for about 20-25 minutes.
   

What is Work?

I get ticked when people - especially women - ask you to do something, paired with a line like "I work full time, so my time to do X is limited." The implication, or perhaps my inference, is that they believe I do not work; that my time is not limited, being at home all day and all. But I do have a job - several in fact. Because owning/running a business, being a crafter for profit, being CFO of the household budget/cash flow, making sure the house doesn't implode, ensuring my family doesn't starve or eat take-out every day, managing my child's special needs and therapy schedule and raising a child isn't full time work, right? Nope, it's overtime.

Is it not work because I enjoy what I do? Because I don't post on Facebook some complaint about my job, like "another day, another dollar?" Is it not work because I am at home, simultaneously coding HTML for my website and balancing a toddler on my lap? Because I don't wear suits to work? Because I no longer have a title and business card at a fancy, large company? Because I don't get paid for every hour that I work? Why do people assume that I'm "just a housewife" if I don't leave the house in the morning?

I'm not sure how to respond without starting some kind of debate, so usually I just say "sorry, don't have time!" and move on.

Evan and HH Update

I haven't talked about Evan's condition much recently, because I am trying not to focus on the downsides of it. While he is doing very well, he is still in occupational therapy and physical therapy for his sensory and motor planning issues. The good news is that he barely qualified for both OT and PT, and his speech therapy was dropped, because he tested well into the 4 year old range for speech! This from a kid who was barely putting 3 words together 6 months ago. We are in transition from Early Intervention to the Intermediate Unit, learning yet another new set of rules and government mandates for why or why not Evan will receive services.

Evan's HH is still a daily part of my life, even beyond the issues mentioned above. For Evan's nap, we have a little routine: read Babar and Madeline books, then I sit in the rocker and knit while he goes to sleep. Every time he goes to sleep he has a gelastic seizure. I get that sinking feeling - a true ache in my heart - a reminder of that .5cm x .5cm x 1.25cm sliver of HH still in his head. It will likely remain there for the rest of his life and I wonder what it is doing to him. Next Wednesday, Evan has his annual EEG at CHOP and I am dreading it. Not only is it unpleasant to have to straight-jacket your screaming child to a board while they glue electrodes to his head, but then you have to sit there listening to him scream for 30 minutes while they measure brainwaves from a lesion that is too deep to reach by scalp sensors. Is there a point? I'm not sure. We'll see.

I have kept in touch with parents of HH kids via the Yahoo! Group for HH families. I feel good connecting, sharing and receiving information from other parents of HH kids - especially the new diagnoses for whom sharing our story and tips on treatment, coping, caring and medication seems to be most helpful. Still, there is NO support resource and the world is nearly void of informational resources for parents; except for a few jargon-laced medical white papers that are incomprehensible to anyone without an advanced medical degree. Navigating the insurance system is such a nightmare and so overwhelming when you are trying to get your head wrapped around the condition from which your child suffers. There is so much wrong with our health care system, I don't even know where to start.

Another 9-month-old infant in Texas was diagnosed with a Hypothalamic Hamartoma and I've been in contact with his mom a lot. The family is on medicaid, so unless they can foot the medical bill themselves, they will need to have the surgery in Texas. If their son is even a candidate for surgery, that is. Fortunately, they are under the care of a doctor who has done about 20 surgeries; not as good as Barrow's 130, but better than having to go with a surgeon with no experience. Believe it or not, this happens quite frequently.

Here is a post in the Yahoo! Group I made today, in response to her very emotional and upset posting that her son was not being recommended for surgery, after the doctors had hinted that he would be recommended.

I really do know how you're feeling right now, because both UCLA and BNI told us the same thing for Evan. When UCLA told us that we asked for a second opinion at BNI. BNI told us when we first went for consult when Evan was 5 mos and having 4 types of seizures every 15 minutes that he wasn't showing signs of real damage from the seizures so they didn't want to operate. Also that he was too young for surgery. I nearly lost my mind. I wanted to scream at the doctors (but I held my tongue) YOU MEAN YOU WANT MY CHILD TO GET WORSE BEFORE YOU WILL OPERATE?? WHAT ABOUT YOUR OATH OF "WILL DO NO HARM??"
But, they were right.

Even in the good cases, I have yet to see the surgery as a cure-all. Evan has issues but they are nothing compared to what they were pre-surgery. I'm sure there are many more surprises incubating in him that we will just take as they come. But for now, we're trying to count and enjoy the blessings, which is why I focus on them so much. It keeps me sane.

I have to agree with other parents on this loop - there are other sides to the story and HH is very complex. Surgery can go right but also, it can go very wrong. If just your neuros in Texas were telling you your son wasn't a candidate, I would be skeptical. But the fact that BNI is also telling you it's not time for surgery, if it was me (in hindsight,) I would trust them. They are truly the world experts.

The red tape and bureaucracy was the biggest hurdle for us. The moment you see him slipping, get medical documentation of it. I had monthly appointments set up with our neuro to watch Evan like a hawk. Once our neuro at UCLA agreed that Evan was showing significant decline (however he defined that - maybe it was that I finally broke down on the phone because my 8-month-old could no longer sit up by himself) we were next in line for surgery 2 weeks later. But the only reason that was able to happen was because while they kept telling us "no," in the background I spent 6 months pestering insurance and getting everything lined up so we were ready to go when they did say "yes."

A caveat: I am just a parent of another HH kid and YOU know your child best. Do what you think is right - but yes, don't give up the fight. Not for one moment.

The peril in helping is that I relive all the details, emotions and experience of 2007 that I'm trying to move beyond. However, this sharing, from other parents, is the gift that helped me the most in our journey to getting Evan to surgery.

I hope it helps, and that they get the right treatment for their son.

Board Games for $2 - and not from a garage sale!

Ah, the holiday shopping deals have begun! I don't normally shop there, but Toys R Us has such a deal going on right now on Hasbro board games that I had to share it. Evan's preschool has a holiday toy drive for a women's shelter, and so I bought a bunch for the kids at the shelter. We did keep "Don't Spill the Beans" which Evan LOVES.



This deal is good in-store only through 11/14. Here are the details:

• Select Hasbro/Milton Bradley games are on sale at Toys R Us for $3.99: Ants in Pants, Don't Spill the Beans, Candy Land, Chutes and Ladders, Cootie, Don’t Break The Ice, Hi-Ho Cherry-O, Memory. There are more games on sale for $7.99 and $9.99 as well. See the full list of games on sale here.
  
• Buy $25 worth of MB/Hasbro board games and you will receive a $10 TRU gift card at checkout (BTW, they activate it 6 hours after you get it, so it's good for a future purchase.) To get the gift card, I bought 7 of the $3.99 sale games.
• Print and complete the rebate form and mail in with your original receipt. All of the games I bought were eligible for $2 rebates each. I brought the rebate form with me to the store so I knew which games were included in the rebate promotion; not all of them are.
  

Net with all the discounts and rebates, they ended up costing about $2 each, AND I got a $10 TRU gift card (so if you include that, the cost is about 80 cents each.)

20% off Coupon Extended to 11/15

The SuperCrafty.com 20% off coupon is extended until 11/15. I had a great response and need a few bucks in order to be able to get this dishwasher installed. This is what big business is all about: saving me from dishpan hands!

EXTENDED THROUGH SATURDAY 11/15!

Save 20% off any order - even sale items! Use code 20off at checkout now through 11/15/09. Even if you used the code before you can use this one for another order. Plus, get FREE shipping on any order of $100 or more to USA and Canadian shipping addresses. No coupon required for the ship discount!

Swap it!

I've got an abundance of little mini-sweater ornaments and I decided to host a swap of them at swap-bot.com, which is a fun website that manages almost any kind of swap imaginable. This is another fun, frugal hobby I've found recently, and also a great way to get something new for something you have already. I've swapped handmade felt ornaments, knitting books, teas and etsy site links. Who doesn't love getting a little surprise in the mail?

If you're interested, you can sign up at swap-bot.com for my swap of a mini knitted sweater, stocking or mitten ornament here. (Links to free patterns are at the bottom of the swap listing.) I am also hosting a sock yarn swap, so if you're interested in that you can sign up for that here.